Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

Enigma52 · Today 14:29
thank you. I’m just so panicking just now. You’re right they don’t hide information from people. Anything he had to say he would have said last week. If I needed this operation asap he would have said. This watch and wait wouldn’t have been an option. Xx

Oh I see what you mean, sorry, i thought you meant it might be another letter entirely that you weren't expecting.

I know this feeling, it's awful. It would be unethical to just slip something like that into a letter though as it would be key to your decisions about your ongoing care. He would have discussed it at the appointment.

I like to quickly scan when I'm ready, then go back through for the detail, then digest.

@Shityshitybangbang exactly. They wouldn't wait three months, if It was urgent. Have faith x

Enigma52 · Today 14:43
thank you. My consultant wanted me to wait 6 months, which I wasn’t comfortable with at all and it was changed to 3 months for the next scan. Xx

@Shityshitybangbang I think the letter just retells everything they said at the meeting, it’s not possible to remember everything at the appointment when it’s so bloody stressful!
Can hand hold while you open it if you like x

@lucysmam are you in Unison or teaching union?

@LemonDrizzle10 I'm in Unison.

LemonDrizzle10 · Today 16:56
thank you, that is so kind, I welled up when I read your comment. My partner is going to read it later. He was at the consultation with me. I just hate reading what is wrong with me, all those medical terms . Life’s so stressful these days. Xx

So, I cried at work today.

I'm not a crier but this shit show got the better of me!

Lots of cuddles from the children, the cook sitting me down with home made pizza, my best friend getting out the chocolate cake and squirty cream while I ranted, a very random chat with one of our Polish Y6's at the bus stop, and an imprompu shopping trip with dd1 have sort of fixed my "it's all shit" day. It's still a bit shitty though.

My classroom colleague talked through yesterday with me too. & I've messaged the union rep to ask if he will ring me after 1:30 tomorrow if he's not otherwise engaged.

I'm now waiting to hear from dd1's best friend if she needs an adult for support at A&E. She was struggling with suicidal thoughts last night & spent a long time here before going home to her dad (mum is at the hospital with her brother who has lymphoma) who sounds like he's trying his best to be supportive 😥

Pass the wine...in a bucket with a straw please! 🍷 A BIG BUCKET!

@Shityshitybangbang definitely delegate opening the shite mail to someone else!!

Flipping heck @lucysmam that is definitely a bucket of wine day!!!!
After I saw the nutritionist yesterday I threw the soya yoghurt and peanut butter in the bin and nearly threw away the wine. Thank the Romans for wine!

@LemonDrizzle10 don't throw away the wine!

She's alone at the hospital, she wants to see what they say first.

Weekly chemo today.
My spotty hands raised some eyebrows but GP gave me hydrocortisone 1% yesterday at my bloods and chemo unit have okayed it.
After a loooooong session I escaped home and randomly started ordering stuff.
In the last 24 hours, I've ordered a green bag off Vinted, green Oxford shoes from Pavers and a hairy ,cuddly penguin. ( Just because.)
It's taking my mind off the rash but I need to stop!

@Zoopet I love a theraputic scroll of Vinted!

She's still sat about in A&E. I don't know whether to get dressed & just go down there - you know sort of maybe with a grown up to push a bit as to what's going on, things might go faster or they might not just leave her to it?

@demivolte
Good luck with your surgery next week and that it goes smoothly.

I've had an utterly pointless trip to see a different breast consultant this afternoon and I am non the wiser about anything. The good news is that a letter that arrived this morning says I do now have a bone scan appointment for two weeks time which today's consultant knew nothing about despite apparently being part of my MDT yesterday morning. She also had not read my CT scan results so when I asked questions like how are my lungs looking she floundered around umming and ahhing and still didn't give me any proper answers other than they're fine (). Now I've got to bother my GP to get someone to read the report out to me because she really didn't want to confess that she didn't know what the CT scan was actually looking for.
One thing I really, really hate is when you sit down in the room and the medical professional that you're seeing says "Now what can I help you with today?". I looked at DP and we both did a mental eyeroll because the only thing that I could say was "I don't know - you told me to come in and I don't know why?"
She replies in a very slow voice
"Why do you think that you're here and what do you think is wrong with you?"
I reply with a direct look
"Because I have a HER2+ BC" and she sagely nods a yes while looking relieved that she hadn't been lumbered with a dementia sufferer or a fuckwit.

It didn't really get any better. They are still pushing the RT and I have said no again but added that I have explained several times now why that is and I will not justify my answer again. I asked what the surgical options are and what the recovery times are for a lumpectomy and a mastectomy - apparently they are exactly the same she says - 2/3 weeks. I do notice that the BC nurse behind her is now actually starting to squirm and has a very tight look on her face.
So I move on and say that I would like to speak to oncology before I make a final decision. Apparently that's just not done. So I say well seeing I still have nightmares, flashbacks and PTSD from my last chemo experience I would like a plan with regards to chemo and a discussion on the variables that are likely post surgery. She said that they couldn't possibly know how they would treat me. I pointed out they already know what it is and seeing as it's identical to the last BC then yes, I guess that they could give me a rough plan or options. She agreed that yes, they could and that she will ask for me a have an appointment with one of the consultants.
She then goes back to badgering me about booking in for surgery. I reply that until I've had the bone scan and seen oncology I would not be making any decisions and I had not decided yet whether to even have the surgery. She continues to to push. At that point I look at DP in desperation and he takes over asking my other questions and reiterates that until I have all the facts then I will not be pushed into making a rushed decision - DP was quite gallant !
So at that point we left and BC centre will send a further consultation appointment for two weeks time after my scan etc.
On the way out I asked DP if it was as frustrating as it felt and he agreed. He said "You know what the problem is don't you? I mean this in the best way but it's you. They don't like you asking questions and pushing back - they're not used to it. Most people are so terrified that they just accept it unquestioningly and go along with whatever they're told. You've been there and you know the pitfalls so carry on and I'm right behind you" It's possibly the nicest thing that he's said to me for a quite a while.
Anyway, we're off to London for the weekend tomorrow morning to see Skindred tomorrow night at Wembley Arena so we can forget our worries in the moss pit for a bit!

@lucysmam
How your employer is treating you is amoral. My manager has needed reminding a few times that I am covered under disability legislation but has been fine about then changing their request etc. Do not accept it - it isn't legal or right of them to do this to without the proper consideration for your health.

@MothralovesGojira it drives me nuts when they call you in then they have no clue or want a general catch up. I'm usually like "erm, I've paid a fiver in bus fares to talk about the weather? Really?". It's a waste of your time, and theirs. I push back a fair bit too - like to know what's actually what before making decisions for y'know, me. Always seems to catch them off guard that I'm not wringing my hands & "thank you oracle of the NHS for making a decision for me without my input". Nope.

My best friend commented today when I was ranting that I've always done it - just now I'm more aware I'm doing it & have a "not without my say so" attitude.

Work tried pushing OcH again today - over the phone when I pointed out I'm covered under the disability act & that's not a legal requirement she didn't know what to say. Said she'd take advice from HR. I'm not refusing it like they're making out, I'm not seeing the issue with it being in person so I can see what their pen is putting on their interrogation form since they want me to allow a complete stranger and non specialist to decide whether I can pee by myself or not 🤷‍♀️ . Tried making out that legislation didn't cover me without it.

Um...yes it does. The end 🤷‍♀️

I really don't know wtf I'm supposed to do. I think they think I'll just shut up and go away & let them bully me into going in if I'm not able to.

@lucysmam
A big hug to you for having a shitty day. I hope your DD's friend is ok.
I've had to do a lot of counselling for DC this week as they're getting shite off one of their teachers who's making them do improvements to coursework (which is probably advisable tbf) but the reason it needs improvement is because he's been rather rubbish & his class is failing. Now the other teacher's had a go at DC because they haven't prioritised his work so DC is now having a MH dive. So yesterday I took DC out and we went to an art gallery and then to Ikea for meatballs and a giant slice of rainbow cake which cheered them up a bit although at bedtime they confessed that they still felt a large degree of passive suicidal thoughts. DC seems a bit better today as they spent the day in pupil support working so didn't have to face the teacher's passive aggressive comments.
@Zoopet When I was doing chemo I developed an insatiable desire to go shopping too. Handbags never interested me pre chemo but in no time at I acquired a large collection of bags by Yoshi of Litchfield and Vendula London. I currently have a large box of bags sat in the conservatory waiting to be listed on Ebay and although I still like bags a lot, I'm a bit more circumspect with my purchases. While on steroids, DP had to take the laptop off me and hide the credit card as every time I started a new cycle I kept trying to book holidays to Disneyland Paris!!

I'm just browsing ACAS info & came across this - so, knowing full well that I'm about to start a new medication, work have specified 6 weeks no absence. The HT herself told me her own mum has literally the same meds as me & has days where the diarrhea (sp?) means she can't finish a dog walk. So, knowing this & still saying 6 weeks no absence immediately puts me on the back foot compared to someone who actually takes the piss with random felt like a day off days off & at a disadvantage? Since random take a day off person is most likely suffering a cold or similar, not an actual life limiting illness, or side effects of the meds that are keeping me alive? Or am I missing something? Or being too simplistic? Or...

I don't know

& they're definitely causing emotional fucking distress. The tension in my shoulders & jaw is not fun.

I'll add ACAS to my list of phone calls unless I can fill in an online "help me" form & ask them to call me back.

Maybe half the problem is that I look just fine, other than the stupid hair 🤷‍♀️

@MothralovesGojira I laughed at your steroid induced desire to book Disney 🤣 I blame the bored but wired randomness. At least you're keeping the delivery people in a job @Zoopet ! I think I singlehandedly kept our postie and Evri man in employment for 6 months 🙈

@MothralovesGojira I spent a good while being counsellor to dd's friend last night too. There's so much pressure at such a young age, then add in family stuff too & it's not surprising really when their MH takes a dive. It's hard enough when you're a grown up ffs.

I would just like to point out that I'm going to be in the mosh pit tomorrow night and not in a moss pit with Alan Titchmarsh at Kew Gardens!

@lucysmam
Don't forget to write all this down. Write down what has happened, when it happened and how it has made you feel every time those fuckwits try it on or talk/write/email you. It's amazing how much detail you forget so get it down in a notebook as soon as you can while it's fresh in your mind.

After today's appointment I suspect that I'm being labelled as 'difficult' and my records have been given one of those secret doctor annotations which means "mad as a honey badger" or similar. When we left the consultant looked so relieved and probably wished that she'd not got of bed that morning.

@lucysmam
Your DD's friend is lucky to have you both there for her.
My DC suffers from depression, anxiety, ADHD and is a Type 1 diabetic to boot so it's a big ball of shite for them all round. I will probably have to email the second teacher to remind him of DC's issues and that advising an ADHD sufferer to pull all nighters is NOT a good idea as that leads to overdosing on ADHD meds which is bad.
I hope that DD's friend can be pulled out of their current dive.

@lucysmam diarise everything
It seems they are being unreasonable, as if their policies indicate you shouldn't be there if have Gastro symptoms, that's their policy.
I hope your union are on board, and get them supporting you , as similarly Macmillan.
Everyone knows it's hard to be an employer, but harder to have cancer.
From all you've said, you've tried above and beyond to arrange appointments at other times.. Don't do that anymore.
Let them get on with it. If you have to be off.. You have to be.. How can you change that? I'm so cross about the lack of care...

Respectfully and without initiating a bun fight that's not been my experience.

@lucysmam That's such shitty behaviour from your school - bloody hell. Deserves a lot of sweat words, but I guess I'll get banned from Mumsnet if I use all of them. I really, really hope that they'll realise what massive c&#+s they're being, and stop making an already hard situation impossible.

I had such a positive experience at work today (sorry!) that I just needed to share. I met a colleague who is in a much more senior role, to discuss a work event that's coming up. They shared that they're not sure they can attend, due to recent surgery. And while it wasn't cancer, their type of surgery was very similar to mine, so we chatted about recovery and weird side effects and geeky surgeons who like to show their patients videos of surgeries... and I just felt so heard and seen. And I know they felt the same way. Just a short meeting, but it was real.

@KentishMama no need to apologise! It's nice to be heard, and understood.

I don't want to go today. I could quite happily sit here & cry that I have to 😥 it's never made me feel like that in almost 8 years at the school.

I feel anxious about going inas well. My blood pressure is through the roof since i went back. Theres one person who i cant face working with and shes on today. She has anxiety and acts like an old fashioned matron but refuses to get her hands dirty or put her name to anything instead nags and nags for us to do everything. She also had bc afew years ago yet the compassion just isnt there. Its all that comparing shit that we’ve spoken about. Ive taken my bp tablets before I go in.